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We believe that people living with haemophilia should have the right to pursue the opportunities they desire – to live lives beyond haemophilia. Liberate Life™ is our way of supporting and empowering people living with haemophilia. We’re dedicated to challenging the status quo of conventional treatment methods, and to creating better possibilities through better care.

“I wanted to do everything that other people could do.”

- Erik Andersson, 33, Haemophilia A

Erik Andersson recalls how his early life was different from other children’s. Even his home was different. Nervous about the consequences of a bleed, his family made lots of adaptations around the house. They put padded corners on the tables. They removed door skirting after he stubbed his toe and split a nail. Erik always felt that people were watching over him. At times he felt left out when he couldn’t take part in the same activities as everyone else. “I wanted to do everything that other people could do.”

As a rebellious teenager, Erik refused to keep away from activities where there was a risk of injury. He would even go to bed at night after an injury without taking his medication, as if to prove a point. “That would be unthinkable today,” he reflects with hindsight. “Of course I'll take my medication. Otherwise, the consequences could be dire.”

For decades, haemophilia treatment focused on ensuring survival and stability – working towards moving patients out of the untreated “danger zone” with the main objective being a stable life. We have come a long way since then. With today’s therapies, treatment can be tailored to meet individual needs and aspirations. Which means rather than just keeping them safe, we start taking their dreams and ambitions seriously and begin turning them into reality.

In summer 2018 Sobi carried out an in-depth study of the lives of people living with haemophilia across Europe. The research exposed the challenges, aspirations and unmet needs, behaviours and perceptions related to life with haemophilia and inspired the Liberate Life vision.

Liberate Life encourages “liberators” – people who live with haemophilia, and who choose to share their experiences and encourage others. People like Erik. Together, we strive to raise awareness and address the needs of people with haemophilia and their families and carers: parents of young children, young adults, and older adults. People are encouraged to share their experiences of life beyond haemophilia – keeping active, travelling, and working.

Climbing a mountain – figuratively and literally

Erik is testament that having haemophilia doesn’t mean life’s opportunities need to suffer because of your treatment plan. He recalls how he spent the summer moving to a new apartment and renovating it, working, exercising, socialising – and climbing Sweden’s highest mountain.

Not a natural handyman, Erik gets a bit annoyed when “things don’t always turn out the way you want them to and some of the materials seem to have a will of their own.” But he completed the refurbishment of his new apartment to a fair standard and in time to focus on training for his summer challenge – to climb Sweden’s highest mountain.

“It's important for me to show, not only to myself but to others, that even though I have severe haemophilia A, I can carry out the same challenges as everyone else. My latest challenge will be trekking Kebnekaise, Sweden’s highest mountain.”

“It's important for me to show, not only to myself but to others, that even though I have severe haemophilia A, I can carry out the same challenges as everyone else.”

Preparing for the challenge

Erik received help from his coach, Ida. Ida got Erik doing interval training – a series of uphill and downhill workouts interspersed with much-needed rest periods. “Nothing must go wrong. He can't slip and fall,” says Ida. “I'll focus on balance and difficult terrain.”

A four-day adventure

The first day consisted of a long train ride, a bus ride, and a relatively easy hike to the first stop, Abiskojaure.

Day 2 was a 15-mile (24-km) trek up out of the Abisko National Park. Erik’s training must have paid off, as he notes, “I make it to the camp full of energy and ahead of my partner.”

Day 3 took in the Tjäkta pass, 1,160 metres above sea level. Here the path gives way to snow and rocks.

By the fourth and last day, it was clear that Erik’s trekking partner Frida, suffering with blisters, unfortunately wouldn’t make it to the summit this time. Erik carried on alone, going a longer way round – about 20 miles (33 km) in the day, taking in the peak of Kebnekaise at 2,099 metres.

With perhaps a hint of understatement Erik notes: “I thought it would be easier. The path is more a struggle against rocks than an easy hike.” And in conclusion: “There is something magical about standing atop a peak and looking out over the landscape; for a moment, it feels that everything is right with the world. I felt that way after climbing Kebnekaise. Yet it was more gruelling than I had expected, and it surprised me a little. Of course, there were easier routes up the mountain than the one I chose. I feel quite content. I’ll be back again when I get the chance.”

A call to action

Liberate Life symbolises our intentions and our actions and embodies our dedication to working for people living with haemophilia, protecting them from bleeds, joint pains and mental burdens – helping them feel safe so they can live a life without compromise. Liberate Life not only spells out our vision for the future of haemophilia care but also serves as a call to action for involvement from patients, advocates and healthcare professionals.

Liberate life

Liberate Life™ is our way of supporting and empowering people living. Read more about Erik's journey via link below.

Haematology

The area of haematology covers a wide range of conditions, including those involving red and white blood cells, coagulation and platelets, and bone marrow.